Since my December 2, 2005 Non-Hodgkin Lymphoma diagnosis, I've been on a slow-motion journey of survivorship. Chemo wiped out my aggressive disease in May, 2006, but an indolent variety is still lurking. I had my thyroid removed due to papillary thyroid cancer in 2011, and was diagnosed with recurrent thyroid cancer in 2017. Join me for a survivor's reflections on life, death, faith, politics, the Bible and everything else. DISCLAIMER: I’m not a doctor, so don't look here for medical advice.

Thursday, December 06, 2007

December 5, 2007 - Land of Few Landmarks

People often come up to me these days, look me earnestly in the eye, and ask, “How are you feeling?” When someone words the question like that – rather than the generic “How ya doin’?” I know it’s more than just a casual inquiry.

“I feel fine,” I reply. “I have no symptoms.” I don’t mind giving that answer again and again. I appreciate the genuine concern behind the question. The fact that I keep getting that question, again and again, tells me my cancer continues to be on the minds of others.

There’s a paradoxical aspect to the watch-and-wait approach to cancer – which, I suppose, is the reason I keep getting the “How are you feeling?” question. Folks find it hard to wrap their minds around the knowledge that my cancer has relapsed, even though I don’t look or act any different than usual. Nor am I doing much of anything about it, other than going for scans every three months. Indolent lymphoma is sneaky like that.

So, the question is a sort of checking-in, to see if there’s any change, any new development that will confirm their prior impression that people with cancer ought to look sick.

Cancer survivors live with this sort of ambiguity, even when they’re in remission. Amy Bartlett is an NHL survivor in remission. In her December 4th posting to her blog, “I Choose Hope,” She writes this reflection on survivorship:

“So now, almost 9 months to the date (March 5th was diagnosis...), I am back in the real world. In many ways, it feels like I never left. I suspect that is because there still an ounce of disbelief in my head that this year actually unfolded the way it did. I often think to myself, ‘Did this year really happen?’ I'm being honest when I say that sometimes it truly feels like there is no way 8 months ago I was staring stage III cancer in the face. Did I really experience chemotherapy? Was I actually bald? Did I have the most amazing team rally behind me to cheer me across the finish line?

But, surviving is hard. This year my entire life has revolved around doctors, research, appointments, tests, results, emotions, and a bizarro kind of excitement. Now that most of that routine is behind me, at least in a daily/weekly regular sort of way, I find myself stumbling on how to just be the Amy I used to be. I wake up in the morning every day and the first thought in my head is ‘I wonder if I have cancer again?’ I hear people coughing and I think ‘I wonder if they have cancer?’ I go to bed and think ‘I hope I wake up tomorrow without cancer.’ I hear from other survivors that these feelings eventually do go away, never 100%, but there will come a day when I realize that I never thought about it. Not even once.”

Amy hits the nail right on the head, when it comes to survivor issues. It’s tough undergoing treatment, but the time after treatment is also tough (although not in the same way). It can be hard to re-enter normal life, after cancer. It takes time, and lots of it.

It’s hard enough for someone like Amy, who’s in remission, but for someone like me – who’s relapsed, but doing watch-and-wait – it’s even harder. My situation is ambiguous. There’s active cancer in my body, but my most recent CT scan says it’s stable. So, what am I? Am I sick? Am I well? Should I be more worried than I am? Am I worrying too much?

It’s a featureless terrain, this land of the cancer survivor. It can be hard – especially at first – to get our bearings, and figure out where we are, emotionally and otherwise.

1 comment:

Carl,Thanks for the shout out on your blog. I am proud of you for facing the big C bravely, too. I will pray for your health.I met Robin Roberts from Good Morning America this morning. She is battling breast cancer and was amazing to meet. :)Best wishes to you - Amy Bartlett

About Me

I am Pastor of the Lamington Presbyterian Church in Bedminster, New Jersey. From time to time I teach Presbyterian Polity at Princeton Theological Seminary and Presbyterian Studies at New Brunswick Theological Seminary. I am married to the Rev. Claire Pula, Director of the Bereavement Program, Hackensack Meridian Hospice in Wall, NJ. We have two children: Benjamin, a singer-songwriter, and Ania, an artist.